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    Old 04-06-2012, 12:16 PM   #1
    social357
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    Unhappy Does it sound like MS?

    I have an unexplained, undiagnosed issue and would very much like some feedback or ideas. I am a 30 year old female, 5'6" and 140 pounds (I was 125-130 pounds until about a year ago).

    Symptom List:
    * Migraines (sensitivity to sound, light, heat and cold; nausea; feeling of pressure). Migraines are EVERY day during an attack, and I NEVER get them otherwise. Like a light switch.
    * Dizziness and light-headedness, sometimes feeling faint.
    * Usually intense vertigo (I feel swirly this time, but not as if I were on a boat which is more typical).
    * Tender, crawling, achy muscles over entire body (body aches, kind of).
    * Shaky muscles: weak, shaky legs, hand tremors, twitching and sense of vibration. Tingly face sensation.
    * Tired muscles, fatigue. Exertion, even climbing stairs, can make me feel faint (sometimes it does, sometimes it doesn't. Try explaining THAT to a doctor, ugh).
    * Difficulty concentrating or following conversations; memory problems and forgetfulness.
    * Symptoms worsen in bright light, looking at computer or TV screens, while wearing contacts/glasses, while attempting to focus (reading, computer work), in heat (I'll pass out or become nauseated and faint if I'm in a hot room, hot tub, or washing dishes in a sink of hot water) and under stress, but eliminating these things do not eliminate symptoms.

    Tests that have been run or "ruled out" disgnoses:
    Thyroid - normal
    CBCs - all normal
    Female hormones - normal
    Vitamin deficiencies (including anemia) - none
    Negative ANA (lupus)
    Clean MRI 2009
    ENG (dizziness and nystagmus test) was negative for inner ear disorders
    Negative tender point test (for fibromyalgia)
    Colonoscopy (perfect)
    Low-normal blood pressure (100/60 typical, though 80/40 not unusual)
    Normal cholesterol
    Others that I'm forgetting...

    I have seen:
    2 different otolaryngologists (ENTs)
    3 OBGYNs (plus one more for a second opinion before a surgery)
    2 neurologists
    Balance and Vertigo specialist
    Cardiologist
    Gastroenterologist
    Accupuncturist
    Chiropractor
    Osteopath

    My health history:
    1998 (age 16) - sick in bed for 1 month. Doctors thought it was mono but blood tests were all normal. Weak, faint, body pain.
    1998 (age 17) - Extremely ill with mono. Bed rest for 6 weeks (nearly hospitalized). Extreme pain, confusion (probably from meds), weakness.
    1999 (age 18) - extreme abdominal pain causing dizziness, nausea, and fainting in a public bathroom. Blood tests normal, pain resolved, released from hospital.
    2000 (age 19) - extreme abdominal pain again causing dizziness, nausea, fainting, and hit my head on the floor as I passed out.
    2001 (19) - severe kidney infection. UTI with no symptoms spread to kidneys and into my blood stream. Hospitalized 8 days, permanently lost some kidney function. During kidney CT, ovarian cyst was spotted on L ovary.
    2002 (20) - began to be extremely sensitive to bright light & heat, causing me to become light headed, weak, and have to sit or lay down to prevent fainting.
    2003 - month long episode of vertigo and balance issues while overseas on vacation. I blamed the malaria medication I was taking, but later will find out that is incorrect. After the vertigo subsided, I had a red, sore, itchy, raised, weepy rash on my buttocks for 4 weeks (about 4"x7" area, solid).
    2004 - pregnancy, normal delivery, no complications. ultrasound shows L ovarian cyst present and bigger.
    2006/2007 - pregnancy, normal delivery, no complications. 5 months after delivery, i find that even light exercise brings on a cold within a week of starting exercising, heat still makes me feel faint and dizzy, going black in front of my eyes. Pelvic region hurts periodically.
    2008 - fell on stairs and cracked my tailbone (xray confirmed fracture). 8 months later, I experienced 4 weeks of vertigo, migraines, dizziness, balance and gait issues, and brain fog following a trip to Belize. Again, I was talking malaria medication and blamed it, but I'd had to start the meds before I left and was fine until 3 days after returning home.
    2009 - 6-8 weeks of vertigo following a plane ride. Severe vertigo, severe migraines, inability to drive, couldn't walk in a straight line, could not look at a computer screen or TV, dizziness, weakness, faintness. I would fall out of a stationary chair while sitting in it, because it felt like the chair tipped and I got dumped on the floor. It felt like I was on a boat all the time. It resolved by itself, but my ENT did discover a blocked sinus, and I had sinus surgery after the episode ended.
    2010 - chronic pain led to removal of the L ovary. Pain continued.
    2011 - bright lights trigger bad headaches/eyeaches. Struggled with fatigue, pain, stiffness, and weakenss. 5 weeks of vertigo attack after a car ride + stressful fight with my husband (started 2 hours after getting out of the car). Vertigo, migraines, etc. all over again. Had to send my kids to stay with my dad because I couldn't care for them. Couldn't even climb the stairs without having to lay down on the floor from dizziness when I reached the top.
    2012 - 3 days after a laparoscopic surgery (trying to diagnose my recurrant pelvic issues), I felt naueseated and have had a migraine every day for 2 weeks now. Slight vertigo (instead of intense as in all my previous episodes), but all the other symptoms are present (see symptom list above).

    I've been having mysterious issues since I was 16. The vertigo attacks have only been present since I was 21 (9 years). My doctors are stumped. I moved to a new state to be nearer to my family so they can help with the kids when I'm sick, so I now have all new doctors who are all stumped too. Despite the clean MRI in 2009, I feel it may be MS. I see another neurologist on the 18th of April to get evaluated for that and other issues. Does it sound anything like MS to you?

    Last edited by social357; 04-06-2012 at 12:57 PM. Reason: remembered another symptom

     
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    Old 04-06-2012, 03:03 PM   #2
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    Re: Does it sound like MS?

    Welcome.

    You stated that you have seen:
    2 different otolaryngologists (ENTs)
    3 OBGYNs (plus one more for a second opinion before a surgery)
    2 neurologists
    Balance and Vertigo specialist
    Cardiologist
    Gastroenterologist
    Accupuncturist
    Chiropractor
    Osteopath

    If you suspect MS or a neurological problem, your list is not going to get you to a diagnosis for MS unless your 2 neurologists were MS Specialists. The other doctors would not be the right doctors to see and a Chiropractor is not qualified to diagnose a medical concern such as MS.
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    Old 04-07-2012, 01:14 AM   #3
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    Re: Does it sound like MS?

    Hi, sociallyskilled. Sorry to hear that you've had to deal with all of this for so long. It's difficult knowing something is wrong and not getting answers. I, too, had difficult climbing stairs which led to my initial myasthenia gravis diagnosis. That all got thrown out though because of all the other symptoms I was having. I would follow Jayhawk's advice and go to see an MS specialist if you're concerned that you may have MS. An MS doctor will have better chances of telling you it might or might not be MS and if not, point you in the right direction.
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    Old 04-07-2012, 05:54 AM   #4
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    Re: Does it sound like MS?

    Hi. I also want to state that an MRI is only good for a week...they can change that fast. Like Jayhawk said, any good MS Specialist will be aware of this and have you repeat your MRI every 6 months.....thats the norm during the diagnostic phase. You absolutely need another MRI, of both the brain and Cspine, with and without contrast....do not let anyone order anything less than that- and get it soon. Is been almost 3 years since your last MRI.....and a MRI is the first diagnostic tool used to decide if its MS...

    GO see a good neurologist, try to get an appointment with a MS specialist, if this is impossible, make sure whatever Neuro you find has a bunch of MS patients...how do you know this? ASK! WHen you can to make an appointment, let them know you are specifically interested in finding out about MS and you want reassurance that this doctor sees at least 25 MS patients a week....if he doesnt, find another one. A MS Specialist is absolutely YOUR best bet; however they arent always available in every part of the world...

    Best to you..something is going on obviously, but the number of doctors you have seen is rediculous if you suspect MS....none of them are qualified to make that decision. You can read up on the revised McDonald criteria, which will spell out exactly what needs to be seen in order to give a MS diagnosis- youll notice the first thing on the list is 2 MS lesions (which can only be seen by MRI under contrast).
    Good luck, please keep us posted.
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    Old 04-07-2012, 07:34 AM   #5
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    Re: Does it sound like MS?

    Even though this test is REALLY not fun, you may also need to get a lumbar puncture (spinal tap). My MRIs were clear for 2 years while I was having symptoms.

     
    Old 04-07-2012, 11:29 AM   #6
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    Re: Does it sound like MS?

    a lumbar puncture is not needed for a MS diagnosis...its no longer part of the mcDonald criteria. It is used to eliminate any other possiblities such as PML or meningitis...so many doctors will use it to rule out presenting symtoms. It is now written that 20% of people with MS have a negative Lumbar puncture...all this will show is Obands, which are indicative of a auto-immune disease; however not specific to MS.....the LP will also show the antibodies for PML or meningitis, which is MORE important than showing Obands, if they are unsure of what they are looking at....

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    Old 04-09-2012, 11:49 AM   #7
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    Re: Does it sound like MS?

    Quote:
    Originally Posted by MSJayhawk View Post
    If you suspect MS or a neurological problem, your list is not going to get you to a diagnosis for MS unless your 2 neurologists were MS Specialists. The other doctors would not be the right doctors to see and a Chiropractor is not qualified to diagnose a medical concern such as MS.
    Thanks for your response. I am going to find out if the neurologist I am seeing is an MS specialist, as well as look up the best specialists in my area.

    I would like to clarify (perhaps unnecessarily, but still) that I know a chiropractor isn't the right person to diagnose MS. But after being told in 2009 it was not MS and with the episodes of vertigo and migraines and other symptoms I've had, and no answers from any doctors as to what it might be, I started taking any advice I could find. My boss at the time of one attack (well, that was the attack when I lost my job; so I think he was my ex-boss) suggested I see his accupuncturist to see if the vertigo might stop that way. My mother-in-law suggested during my attack last summer that I see her chiropractor. My mom wanted me to see an Osteopath because her friend's son is one and he did a treatment on her once that made her feel at peace. Or something. Desperation often makes a person quite willing to try anything!

    I don't know that it is MS more than I think it's anything else, I'm just running out of ideas. I just found out an hour ago that I only had 2 tiny spots of endometriosis and no fibroids or any other major issues, so my doctor referred me to a psychotherapist to be evaluated for PTSD or other issues. I'm a pretty scared and confused person right now...

     
    Old 04-09-2012, 11:58 AM   #8
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    Re: Does it sound like MS?

    Quote:
    Originally Posted by MSNik View Post
    Hi. I also want to state that an MRI is only good for a week...they can change that fast. Like Jayhawk said, any good MS Specialist will be aware of this and have you repeat your MRI every 6 months.....thats the norm during the diagnostic phase. You absolutely need another MRI, of both the brain and Cspine, with and without contrast....do not let anyone order anything less than that- and get it soon. Is been almost 3 years since your last MRI.....and a MRI is the first diagnostic tool used to decide if its MS...
    Good advice, thanks. I had no idea even a week could make a difference. My regular doctor before I moved was still citing that 2009 MRI to prove her "point" that I was making it up. I feel very betrayed by doctors lately, but at least I am arming myself with the knowledge I'll need to go into battle to get a diagnosis (MS or otherwise). Still, all the diagnostic websites sort of suggest that you'll either have lesions and be diagnosed during your first MRI or you won't, and you should move onto a different diagnosis. No one says anything about missed diagnoses, or how to proceed if the symptoms continue/recur and you're still not diagnosed. So again, thank you.

    Last edited by social357; 04-09-2012 at 12:05 PM. Reason: parenthetical comment

     
    Old 04-09-2012, 12:00 PM   #9
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    Re: Does it sound like MS?

    A chiropractor can worsen your problems if you have MS. Develop a good stretching routine and make it a habit.

    Is the psychotherapist a medical doctor? What life event would cause PTSD? Be careful not to get lumped into the latest malady. A neurologist can put you in touch with counselors who can help you deal with stress relieving methods including biofeedback.

    Remember, if you have MS, it is all in your head! (most lesions are, that is).
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    Old 04-10-2012, 10:06 AM   #10
    social357
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    Smile Re: Does it sound like MS?

    Quote:
    Originally Posted by MSJayhawk View Post
    A chiropractor can worsen your problems if you have MS. Develop a good stretching routine and make it a habit.

    Is the psychotherapist a medical doctor? What life event would cause PTSD? Be careful not to get lumped into the latest malady. A neurologist can put you in touch with counselors who can help you deal with stress relieving methods including biofeedback.

    Remember, if you have MS, it is all in your head! (most lesions are, that is).
    Haha on the "it's all in your head." I guess that IS what my GYN specialist is suggesting now. Chronic pain disorder, ptsd, or...?? There are some psychotherapists who are counselors and some who are actual psychologists with phDs. I have seen counselors before and I didn't find them helpful, so if I see anyone, I will choose a medical doctor + counselor/therapist.

    Good to know on the chiropractor thing. The one I saw was good, I think, because he saw me in the height of a vertigo attack, and he didn't do a full adjustment on me because he didn't want to make anything worse. He tested my range of motion, had me close my eyes and turn in a complete circle (and I was facing the wall when I opened my eyes. I'd done 3/4 of a circle and tripped over my feet as I turned), and that kind of thing. He took a couple xrays of my neck and spine too, but as far as I remember, he didn't crack my neck or back or anything.

    I see a neurologist in 8 more days so hopefully I'll get answers then. On my doctor's website, it says, "patients at our clinic usually see our neurologists for: parkinsons, MS, stroke, (etc)" and the doctor I'm supposed to see has a phD in neuroscience, is board certified in neurology and vascular neurology, did his residency at Yale, and has been practicing neurology since 1976. I guess he's not a specialist in MS, but I don't yet know that I NEED a specialist in MS. If he doesn't seem helpful, that's where I'll be going though. I hate waiting and not knowing.

    Well anyway, thanks for all your help and insight!

     
    Old 04-10-2012, 11:12 AM   #11
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    Re: Does it sound like MS?

    I hope your visit will go well. I go to the University of Kansas MS Clinic. It is located within a number of neuro specialties. They have neuros who handle Parkinson's, while others serve a variety of specialties. My neuro sees MSers.

    Do let us know how your appointment goes!
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    Old 04-19-2012, 10:10 AM   #12
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    Re: Does it sound like MS?

    The doctor was horrible. I warned him ahead of time that I might cry and if I do, he should just ignore it. It happens because being sick is so emotional for me. In 2009, it was so severe that I lost my job due to it. In 2011, I had to send my kids away to live with my dad, I had to leave my home in Arizona to move in with my mother while my husband packed up our house so we could move nearer to my family for help (we didn't have any family support in AZ). I'm working again and am on the brink of losing my job again because I can't make it through a full day of work. It's torn apart everything I once knew my life to BE. So yes, it's emotional for me to discuss it. I can't help crying sometimes. Instead, the doctor told me I was hormonal and needed to be on hormone supplements.

    He asked if I exercise. I said not during an attack, becasue I am so weak I can hardly get up the stairs some days. He said I need to exercise even if I collapse. I have 2 little girls. I take them to the park, I play with them, I chase them around on their bikes, run up and down stairs for them. I'm not the fittest person in the world but I'm not lazy. I work full time, take care of the kids, keep the house clean and the laundry done. When the fatigue during an attack hits, it crushes me. I can't do laundry, I can't pick up my kids all of a sudden, where before, I could carry my 50 pound daughter all over the place.

    He saided I needed an EKG, then 10 minutes later said he COULD order me tests but he wasn't going to. He latched onto my symptom of headaches and prescribed a medication for me. I asked how it would help the fatigue, weakness, heat intolerance, shaking, leg pain, and tingling hands. He changed the subject and said that the medication would take 2-3 weeks to start working, and based on my history (episodes lasting 4-8 weeks), I would be better by then anyway, so we wouldn't be able to tell if it worked or not. Then I should call him in several months to go off the medication. By then, I couldn't speak. I was about to collapse into tears of rage and frustration and couldn't get a word out of my mouth.

    I am so angry to be treated like this AGAIN. I don't know what I have, but apparently it isn't a classic case of it. I can't find anyone who will even listen to me. In previous attacks, doctors have latched onto the vertigo and ignored everything else. I don't have much vertigo this time, only a little when I'm tired. So this guy picked headaches. My headaches are controlled with the meds I'm already taking. It's the crushing fatigue, the weakness I feel when I'm standing in front of a hot stove or taking a shower, the shakiness through out my whole body that makes me feel so weak...

    I asked this doctor if it could be MS. He said "No, becasue people with MS don't get headaches." I know THAT isn't true. I have 2 friends who were diagnosed with MS in the last 2 years, and the girlfriend of another good friend has MS too. They ALL get headaches during their flares.

    I don't know how to get help anymore. How do I get someone to listen? I am working on getting a referral to the OHSU MS Clinic but I can't guarantee they will be any better. And that's another 3 weeks before I can get an appointment. Emergency room? How many of you were diagnosed in the emergency room?

     
    Old 04-19-2012, 10:49 AM   #13
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    Re: Does it sound like MS?

    You need to find an MS Specialist. This doctor does not appear to know MS. Why would any doctor tell you to exercise even if you collapse. I would question said doctor's medical certificate/license.

    An ER visit can get the ball rolling, but a visit to the MS Specialist can as well. Call them directly. Most MS Clinics/practices have slots for new patients.

    When you are fatigued, I would encourage you to stay away from stairs.
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    Old 04-19-2012, 11:00 AM   #14
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    Re: Does it sound like MS?

    I'm trying out the OHSU MS Clinic, but they need a referral from my insurance which takes 2 weeks to process from the day they receive it. Then 3-7 days to get me in for an appointment. That's a long time when getting through a single day at work is an intense struggle. I can hope that since my attacks have never lasted longer than 8 weeks, I'll be "better" by then, but that still doesn't give me a lot of hope. At this point, I know they'll come on and I know they'll go away, but it's still so hard getting through the time when it's actually HAPPENING.

    My kids could tell I'd been crying when I picked them up at school (5 and 7 years old), and they were so distressed they couldn't sleep. They were crying that I might die, and they were so scared and worried. I was trying my best to reassure them. I hate seeing them affected and scared like this, and there's nothing I can do.

     
    Old 04-19-2012, 11:27 AM   #15
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    Re: Does it sound like MS?

    MS can cause depression which can affect your emotional levels. Since 2002 when my MS worsened, my emotional threshold was affected and I will cycle through times when I might cry or laugh when something may not be sad or funny. When these things happen, I will withdraw to my "fortress of solitude" where I can zero out my brain and leave the stress behind. You might need your own place of retreat where you can recover.

    I certainly hope you can get your appointment. I think you will be delighted in the caliber of care you get from a specialist who really knows what you are going through. I love my neuro because she knows what I experience and she also cares enough to share info she has learned from the most recent research, tips from other patients, and other advice. I truly hope you find an amazing neuro because they make a tremendous difference.
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